What a turn around i've have over the space of a week. My life has gone from one extreme to another.
At clinic the docs gave me 2 drugs (to add to the pharmacy of meds i'm already taking) with the hope that they will help until they can get me in for my inpatient stay. They gave me some omeprazole for my reflux (had this before I had my gall bladder removed and I used to sell it when I was a drugs rep so I know it's a bloody good drug) and a new inhaler called Spriva.
Well on Wednesday morning during my usual routine of project vix I take the Spriva and within hours i'm walking around and my breathlessness has all but gone!!! Only hours before I couldn't even walk to the loo without being out of breath.
Through the rest of the week I just felt better and better. I even managed to cook in the kitchen and not have to leave because I couldn't breath due to the humidity or because i'd done too much and got puffy and tired. This Spriva is amazing.
Anyway we had a lovely mothers day dinner which hubby cooked and my sister and her hubby and baby came along too. We had my homemade chicken liver pate to start which was scrummy (even if I do say so myself..lol) then roast pork with all the trimmings and trifle for dessert.
Needless to say we were all pretty stuffed after that and didn't eat for the rest of the day....lol
On Monday my mum and sister suggested going for a walk in town and as I was feeling so strong I said ok. I had the wheelchair in the back of the car so if needed we could always swing back and get it BUT I didn't need it.
I did get a little puffy and tired a couple of times but we'd just stop for a few mins for me to get my breath or stop for a coffee but it was nowhere near as bad as I had been. I really felt that I didn't need to go in for the inpatient appointment but Tuesday was supposed to be the day I go in so hopefully they'd see I was better and not keep me in for long.
Well Tuesday comes and i'm all packed up ready to go in and have gone into work with hubby (as his work is 1 hour closer to the hospital than our house and saves time travelling all the way back to collect me)
10 o'clock comes and no phone call from the bed manager to confirm me coming in. 10.30 comes, still no word (they've had a week to try and get me in and have spoken to the bed manager a couple of times and he thought there wouldn't be any problems). 10.45 comes and the bed manager calls. As I have to have a separate room there is an issue. Although there are not that many admissions all the patients that are in at the mo all need separate rooms so there isn't any room.
I'm kind of relieved as I don't feel unwell. I decide to chat to the doc about just popping up as an emergency outpatient so that she can see how well I am then maybe I wouldn't need the inpatient bed so problem solved.
She said ok so up to London we trundled again only this time I walked into clinic. Everyone instantly noticed this as I went to register and they were all surprised and pleased for me.
So through the rounds of dietitian, physio and docs we started. Now I am so swollen now from the steroids that I can't get on half of my shoes, I can't wear socks and it's not just my legs but my back, bum, tummy and face that seem to be carrying all this extra fluid. I got weighed (different scales again) but in the space of a week have gained another 3 kgs!!!! AAARRRGGGHHHHHH I'm vast. I'm now nearly 3 stone heavier than my normal weight. The dietitian puts in big letters on my notes "MUST GET FLUID OFF".
Thank god, as it is so difficult to walk with all this fluid and its disgusting that you can grip my legs and leave finger marks that last 10 mins...yuck!!!
Anyway next up physio and the good old spirometry. Now a couple of weeks ago my lung function Fev1 had dropped to 19% and last week had only gone up to 21% post cold. Surely the way i'm feeling now, since being on the Spiriva it should be better.
So deep breath in and blow and continue blowing until it feels like your eyes are going to pop out. I do this twice and the physio took the best blow and worked out my percentages.
I blew a 27!!!!!! 27%!!!!!!!! In the space of a week my lung function has gone up by 6%!!!! Wow.
Next up is the docs and my doc is amazed to see me walking around and is even more astonished by the spirometry results. She looks back over my spirometry over the years and this is the best it's been in over 3 years!!!!! She said that she's so impressed with the results this Spiriva has given me (and she only prescribed it as a bit of a last resort) that she's going to start using it more often. My infection levels based upon last weeks sputum was less 1, so I am the healthiest i've been in years.
The doc said she was so glad that I came into clinic as I really don't need to come in as an in patient at all. She was so surprised with my turnaround she got the CF nurse to come in and look at the results....lol
Anyway, she agreed that I need to drop down off of the steroids and has also given me some water pills to help me loose some of the fluid. She and the CF nurse also gave me a booklet on lung transplantation as although the Spiriva is reducing the breathlessness and helping me function, the damage is done and I don't want to get to a stage where i'm too sick to be able to survive a transplant.
So hubby and I leave the hospital very positive and quite bubbly as I don't need to come back now for 8 weeks!!!! I feel the best I have in years.
Now to get down to reading and filling in questions about lung transplant.
Hmmm think i'll blog more later about my thoughts on that subject.
Rest in Peace Aunt Marybeth
1 year ago